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The Never-ending Challenge of Family, Part 1

As it is Memorial Day, and we stop to thank our veterans and those who have selflessly served us and given for us, I can’t help thinking of my younger brother who passed away about a month ago.

This post will be a bit off from my usual subjects of art or food, but don’t let that stop you from reading! I think many of us will admit to having grown up in a dysfunctional family. I know I will! I still remember my Abnormal Psychology class where the first discussion was to try to define normal. Okay, so we learned there is no “normal” and applying that to my childhood there wasn’t much “functional” in our family life.

My younger brother was diagnosed with juvenile-onset (Type I) diabetes when he was 10. I remember that it was at the holidays because they let him come home for Christmas morning with the promise that he not eat anything while there. Well the story goes that, during his hospital stay, the doctor and our mom were talking outside my brother’s hospital room and my brother overheard their conversation. The doctor supposedly told mom that my brother would most likely not live past 30; now remember, this was the early 70’s. The story my brother tells is that he decided to enjoy his life while he was here and he used this to substantiate not taking care of himself, not eating right (he would drink a Big Gulp of Pepsi – no, not diet – most mornings), not exercising, drinking and doing drugs… a cautionary tale, for certain, when one has access to syringes for insulin use, they can also easily double for drug use.

This past decade showed the results of his lack of care, and lack of accountability for his health and his situation. He was on dialysis, then he was blessed with a kidney transplant, then if his MediCal had been in effect he could have had a double transplant and received a new pancreas (wow! what a difference that would’ve made). Then he had one leg amputated below the knee and about 6 months later the other leg, too. He was wheelchair bound and unwilling to help himself in any recognizable way. Due to neuropathy, his hands became useless curled-in claws; he was for awhile able to use a spoon to feed himself, but mostly needed round-the-clock care.

Throughout this time, he was to put it as politely as possible: a curmudgeon. No one, and I mean, no one wanted to be around him. He was a victim and he made sure everyone was as miserable as he was. In many respects, he because the junior version of our father. He was also in a lot of pain as he had wounds that were not healing and spent the majority of these past couple of years in the hospital. The care facility had, with this last trip to the hospital, informed us that he was no longer welcome there and could not return.

Growing up, I found myself being a die-hard optimist. Whenever I would get into a pity party, I would think about how lucky I was; I wasn’t, for example, in a wheelchair, blind, deaf or suffering from any other inability to care for myself and others. There were times I wanted to shake my brother and yell at him Cher’s famous movie line, “Snap out of it!” I still recall the Christmas Eve dinner out at a local Chinese buffet with mom and my brother when I repeated the infamous Dr. Phil line to him, “And how’s that working for you?” Surprisingly, that stopped his whining in it’s tracks (at least for the remainder of the meal)…. on an aside, he later starting attending NA, which help him build friendships and gave his life some purpose.

He was the type of person who had always been bailed out by someone and never took responsibility for his own life or actions. I had loaned him money, given him advice, and even gotten a lawyer acquaintance to take on a case to defend him when I later learned he was guilty and had lied to me! My parents, too, had gotten him out of every conceivable situation he could get himself into, giving him money or letting him move back in with them for the last several years.

And he was cantankerous, obnoxious, and had reverted back to a child in many ways; throwing temper trantrums from his wheelchair like he was a 4-year-old. In the end, he managed to push everyone away from him. My sister, who lives in Omaha, was the one to tell me he was back in the hospital and not doing well. I was his only living relative in the San Diego area. So, guilt, I guess, made me and my son drive to the hospital to see him the night they decided to take him off life support.

I’d spoken to the nurse caring for him and she knew we were on our way. His heart was not going to keep him going much longer and they were discussing a move to hospice. It was a Sunday night and hospital visiting hours were ending at 8:00 p.m. however she said we could come and stay as long as we wanted. When we arrived one of the nurses asked when I had last seen my brother. This took me back and with a lump in my throat I said that it had been about 2 years. The breathing apparatus was horrible, keeping his jaw propped wide open so that he could breathe. I know that he recognized my voice, although I still wonder if the fact that as I age I sound more like our mother and maybe he mistook me for her. I know that he recognized my son’s crazy afro curls. But, he could not speak.

He could express pain, which he was in a lot of with wounds on his leg stumps which weren’t healing. He was being given morphine, which we knew gave him hallucinations, making him think people were going to throw him out of where he was living or that he was being kept against his will, etc. But at this point, I don’t know how much he knew about what was going on with him. We talked to him and went with him as they changed floors for the continuous care making him as comfortable as possible.

Seeing my brother this way broke my heart. It’s hard to be angry with someone you love when they are this helpless. Also, the fact that he could not talk back, made him easier to be around (wry smile here while wiping tears off my face). I had so many emotions coursing through me all I did on the drive home was cry. I took the next day off and stayed in bed grieving. Tuesday night after work I wanted to see him again. They had decided he would not make the transition to hospice and were keeping him in the hospital.

I kept thinking I would not want to die alone and knew that none of his friends had gone to see him. I have to admit the shock when seeing him. He was wearing a green hospital gown that I can only describe as “fresh” green. It wasn’t a pale, washed-out hospital gown but a cheery color against the stark white sheets and pillowcase. He was asleep, unconscious, unresponsive, and heavily medicated. As I sat on the hospital bed with him, his breathing would stop for what seemed like long periods of time and my eyes would widen wondering if he was gone, but then he’d gasp and start breathing again.

He did not respond to my voice, as far as I could recognize, or my touch. I started to tell him stories of our childhood growing up in Prairie Lane, an Omaha neighborhood. Remember when we used to play Red Rover using the sidewalk in the middle of the front lawn as the dividing line in any yard game? Remember, back before childproof lids, we would mix baking soda and vinegar in empty pill bottles, put them in the middle of the street and then run like mad to get away before they exploded everywhere? Remember when you took my bike and wrecked it, losing your 2 front teeth? Remember when you shot a bottle rocket off from a soda bottle you held in your outstretched hand and it boomeranged back at you, burning you in the stomach? Remember the animals we had, what a menagerie! Remember when I realized what was actually in that foil-wrapped package in the freezer labelled “Snake Food”… well, you said, what did I think you were doing with the mice? Ewwww.

By this time, tears were streaming down my face and I no longer tried to stop them, just let them fall. My brother seemed so child-like laying in the hospital bed and peaceful. All my anger and resentment towards him evaporated; forgiven.

I don’t know whether it was for him or for me, but I sang lullabies to him, the ones mom used to sing to us at bedtime, starting with his favorite: Puff the Magic Dragon. Then, I Gave My Love a Cherry, 14 Angels Guard My Sleep, All the Pretty Little Ponies, and yes, Twinkle Twinkle. I have no idea if he heard, sensed, or even knew I was there, but that was the last time I saw my younger brother alive. His heart stopped the next morning. The hospital never called me as the written directions they had were to let mom know. My sister then sent me a text.